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snappy

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Everything posted by snappy

  1. Thank you to those that responded to my post. It was all busier when I was here in 2008. Sometimes, other than asking a specific question, you just want to search out experiences that others have had. If I posted a question I would like to think there were others here with a similar situation. NSCLC is generally a pretty big topic. Thanks again and I will just look around.
  2. I have a question and I don't know where to ask it. I picked this section and topic thinking it might cover most everything. Maybe I shouldn't be asking but I want to know. I came to this forum in 2008 and there were a lot more people posting about their lung disease journey. I am especially referring to the NSCLC section. There is only one recent thread in the section with last post June 7th. The one prior post goes back to April 16th. Actually before the April 16th post, that thread went back to January. I even posted in it then. Where are all the posters. It was a lot more active when I was here before. I must be missing something because I know there seems to be more cancer than ever out there. I see familiar faces, and that is a really good thing. I was just going to do some reading and no particular questions.
  3. Thank you Katie and Judy for the posts. Judy, it sure is frustrating when you just know what causes something and no one will listen. Glad you finally got someone to listen to you. I have read so much and I know that this does not mean it is the end for my husband. On the other hand, I have to not get to relaxed in the event it would turn that way. Everyone is different. I know that. I just have to keep re-assuring my husband and not sure he is hearing me but will keep working on it. His positive attitude is important. I have done a lot of research and am asking questions. I am learning a lot. I just have to be careful how I approach the Oncologist. We do have a good one and so I definitely want to ask questions and not tell him what should be done. Thanks, Mary
  4. Hi all; Again, this is Lisa's topic but I want to thank fillise for adding to the responses. I know this disease can go either way but I am encouraged by these posts. We are not up to time for a new scan yet and so have no idea the response to the current treatments. Thanks fillise for your sharing. Katie, I have been to GRACE and got good thorough response on another topic other than the bones. Thanks for the referral. Had been referred before but this time gave it a try. Lisa, I keep thinking about your Dad and how he is doing. Will be praying for you both. Mary
  5. Thank you Annette for your kind and encouraging words. I appreciate it.
  6. Katie, just want to say a quick thanks for response. I do know how true Ned's words are. I have even kept them to remind myself. Thanks, Lisa, will keep praying for you and your Dad.
  7. Not sure how and where I should update. I am just going to make this the second part of what is posted first in this thread. Regular Scans seemed well until latter part of 2010. Near end of year broke out in rash and got to where it looked just awful, and itching. Various issues including Type II Diabetes. Severe nose bleeds a year apart, the last November 2010. Platelets and WBCs were low, and on and on. 9-14-2010 had the 2nd of 12 ‘planned’ IVIG infusions (Octagam) every 28 days for a year. He did not like how he felt after infusions and did not want more. Were needed because his WBCs and platelets were too low. 10-19-2010 Routine PetScan . Saw Oncologist 11-4-2010. Scan shows activity in a couple lymph nodes. He wanted Joe to see his surgeon and if she could do biopsy to check if cancer. Only way to know for sure. Earliest appointment was 11-24-2010. Grrrr. There’s blood vien/arteries so near the spot if she were to hit a blood vien/artery, could bleed to death before could stop it. Prior radiation causes everything to stick together and harder to get thru as it toughens up, making it harder to work with. Both doctors highly suspect it is cancer. He finally agreed with the Oncologist to do another IVIG infusion 11-9-2010. By that time he had developed an awful rash. He cancelled the infusion. No one really felt the infusions caused the rash but we did. They insisted that was not one of the reactions to the IVIG. That made all this more disturbing. We now have paperwork that states it does that, just rare. All Joe’s reactions are on the rare side. Joe’s hands were bothering him long before he really broke out all over. It was gradual and then suddenly got worse. We did not even realize it was serious when it first started. Joe described it like something crawling under his skin. He also got BAD headaches right after the infusions. I had a link but not sure if I can post links on this board. No one would see him when he tried to get an appointment for the rash. The point is this was an extreme event. This rash became a big thing and got worse and worse before anything got it to clearing. The dermatologist finally wanted him on Prednisone but PCP said he could not without using insulin because Prednisone would raise Blood Sugar. Numerous appointments and several doctors with input. Frustrating to say the least. I won’t put any more of the details but it was an awful time. I share some of this for others just in case you ever have an experience and need to do some research to learn about it. There was a recall of some of what was used 3 days after Joe's first infusion. The second infusion he had and then they recalled all that was used, 9 days after his infusion. Ultimately, the manufacturer has dropped out of providing it. Only took it off the second time as a precaution. Just the first time that they had discovered too many people having problems. Altho their problems were different than Joe's. Still makes you wonder. This was serious and long time clearing up. His WBCs are looking good now. 12-2-2010 Oncologist told Joe he could do the ‘wait and see’ or start chemo. Since it most likely is the cancer, Joe chooses to do the chemo. They order another Petscan for the next day, 12-3-2010. Surprises me that they manage to get a Pet Scan for the very next day and yet all those weeks wasted before seeing the surgeon because we had to make our own appointment. GRRRRR! The PetScan had to be within 6 weeks of starting chemo and the October 19th one was too far back. He started on Chemo (Navelbine) and Erbitux (cetuximab) and had an allergic reaction to Erbitux. That one would have caused a rash on the face. It won’t now but might have been a good one to use. Joe has the EGFR mutation. The Dr was 'surprised' at the changes in the PetScan from October 19th to December 3rd. Now, the lung cancer has returned in ‘both’ lungs and the lymph nodes and spread to the lower lumbar in the bone/marrow. It is classified stage 4 terminal. He had 3 MRIs done also after the second scan. Thoracic spine, Lumbar spine and a Brain Scan. Brain was okay. The pain in his back was so bad one night that the doctor got him started on radiation. Think that started January 10th. Five days a week for radiation. Chemo one day a week for 3 weeks and a Neulasta injection on week 3, and then off 14 days and another 3 week cycle. After 3 cycles will test again and see where we go from there. January 20th and 21st no chemo or radiation as his WBCs (0.9) are very low. They had finally got good. I am spending quite a bit of time researching some cancer things. Appreciate any suggestions on anything I might do to hopefully help keep treatment to fight this disease. The shots he got Thursday and Friday were Neupogen. Today, January 24th WBCs are back up and treatment have resumed. I mentioned the EGFR mutation because I thought maybe tarceva would be an option. At the last Oncology appointment the Dr did not know if he could use the pill since he had the allergic reaction to the Erbitux (cetuximab). I thought he was going to check but not sure. I have inquired on another site but cannot say that I understand what I have read yet. Still reading thru it though. Next appointment is Feb 10th but still will not be thru with the 3rd Chemo cycle. It will start this week and lacking the one missed last week. I am confused as to whether the cancer is bones or bone marrow. Dr referred to it as bone but the test looks like it says bone marrow? I know a lot more than our first time around. It seems it is always new things to learn. This has been mind boggling. I want to spend quality time with him and yet don’t want something to slip by that we should know about. I appreciate any input. I will watching and reading the NSCLC section.
  8. Lisa, I hope your Dad can keep his spirits up. It really will help him to fight this disease. You can really learn a lot on the Internet. Just as Ned posted. Of course everyone is different. You learn what options might be available. My husband is in a very similar situation as your Dad. I am trying to learn all I can so that at least he can have a chance to fight back. I will have you and your Dad in my thoughts and prayers. I still do not know if my husband’s cancer has gone to the bones or bone marrow. Oncologist said bones and yet the MRI reads like bone marrow. Could Ned’s post also apply if it is the bone marrow instead of the bones as Lisa's Dad's is. Other than that my husband is just about the same. Thanks. Hope I didn’t do this wrong by asking here but I thought maybe just a yes or no.
  9. snappy

    Sarcoma cancers

    Thanks Carol, That one does looking interesting. I was just checking on two of the boards I post on first to see if anyone might have any information. MD Anderson is one of the 3 places that specialize in sarcoma. Ewings Sarcoma is more often young people. Anyway, thanks for the site.
  10. Connie, Thank you so very much for making that call. I really apprciate it. How sad. I was afraid of something like that but hoping it was not the case. She always reached out and offered help anytime someone was diagnosed with cancer. Thanks again,
  11. Hi Patti; I cannot seem to get her out of my mind. I would let you know if I ever heard but it is not seeming likely. Connie; thanks for all of the info. I did know about Katie trying to call and that was the last I heard. I also had tried emailing and it didn't come back but also didn't get answered. Thanks again.
  12. snappy

    Sarcoma cancers

    Hello and thanks for the reply. I already did that. Nothing there of any help. I think this pretty well answers my question. I know it is really rare. Just thought I would try asking. I will just find a message board for sarcoma. I just wanted to start somewhere that I had already been. Thanks again.
  13. snappy

    Sarcoma cancers

    Is there anywhere on this message board that talks about Sarcoma cancers. Specifically Ewing's Sarcoma. It is generally a childs cancer but not in this case. I have read at MD Anderson but looking for personal experiences like are shared here. Thanks,
  14. Hi Katie; I know there was a post here somewhere and you had tried every way to reach Judy-OK and got no answer. Wanted to see if you ever did reach her. I cannot find that other post. I found the first one I posted. You even tried calling. Thought I would ask while I was here. Came to ask a new question. Thanks,
  15. Hi Judy; I am a little late on this post but if you are reading, I want you to know that I am still thinking of you and praying for you. You are one that I watch for.
  16. Hi Carole; Glad to hear that you had a good trip. Enjoy your walks but do be careful. We are doing a little better each week. Always something to deal with but not major. Still getting used to how slow the recovery is.
  17. Thanks for the input. I really appreciate it. We will be looking into this. Connie; As far as Max goes, I just realized I have his email address. I knew we tried exchanging by PM but something didn't go right. He didn't get mine but I got his. I forgot all about it as was just before my husband's surgery. I am going to send him an email. I will ask him to check in. Thanks again.
  18. After having lung sugery is it standard practice for the patient to follow up with some kind of physical rehab. I don't remember reading about anyone doing it. My husband had his lower and middle right lobes removed May 16th, 2008. People that have transplants and people that get LVRS do have to do pulmonary rehab. I remember meeting Max on this board and he had had surgery in December and was questioning maybe getting into a rehab. He was seeing a new Pulmonary Dr. If he ever posted again about it I missed it but don't think he did. I just think it would be beneficial. Maybe not if the cancer is back and/or the patient is still doing more chemo. Like my husband is not doing any of that right now. I think it would be good to get him built back up with guidance thru a Pulmonary Rehab program. Any comments are appreciated. Thanks,
  19. Hi Chris, that is a lot to deal with. Take it slow coming back. It is so sad how a death in the family so many times brings out the worse in people. I will put you and your Mom in my prayers.
  20. My husband found out when he went to the Heart Dr 9/7/07 for heart symptoms, SOB, pains. X-ray was questionable. 9/14/07 had CTscan. Heart Dr referred to Pulmonary Dr re:'RLL mass with hemoptysis, weight loss, etc. RLL neoplasm by CT-need biopsy bronchoscope." It still was not until 1/10/2008 by needle biopsy that cancer could be confirmed for sure and it was staged 3B. Broncoscope couldn't get enough for biopsy and altho cancer was not ruled out, Pulmonary Dr was thinking it was something else, such as Valley Fever. 10/31/07 was told as result of Broncoscope that it was Rare Pulmonary Infection: ACTINOMYCOSIS. Would not have known except by chance and it was already 3B. No obvious symptoms of cancer.
  21. Hi Judy; Sorry you have been so down. My husband didn't have the avastin. He only got thru the taxotere one time without allergic reaction. He pretty much ended up with Carbo and something else. But what I think got my husband was the radiation. No one would commit to what made him so sick. He had some really bad times. He was treated very aggresively. I guess it really doesn't compare to the drugs you are asking about. I do know he was able to get the drug that you couldn't but still very tired and took while to get the nausea under control. I really wanted to say to you that what my husband has gone thru was awful but at least it did work. It all did what it was suppose and he got to have surgery and it worked.. I will keep praying for you. I have learned to hate this disease. God Bless You Judy and take care.
  22. Hi Carol; I will look forward to what you find out from your pulmonary doc. Enjoy your company and I will read it when you post. Proper exercise is a big key to better breathing, diet can also affect breathing. Exercise is not what someone with 100% lungs would do tho. Steady working and endurance is the goal. Pulmonary Rehabs are a great place to learn if possible to attend. Hope you have a nice time with your company. Thanks for sharing. Thanks Ned for your encouraging words.
  23. Confirmed Cancer by Needle Biopsy 1-10-2008 Treatment started 2/25/08 - Surgery May 16, 2008 NSCLC - Squamous Cell Carcinoma Stage 3B Chemo and Radiation Treatments together First 5 treatments were just on Mondays. Week 1: Carboplatin (paraplatin) and Pacitaxel (taxol) - Allergic reaction to Taxol. Week 2: Carbo and Taxotere - OK Week 3: None done as in Hospital. Week 4: Carbo and Taxotere - Allergic reaction to Taxotere Week 5: Carbo and Taxotere - Allergic reaction to Taxotere Week 6: VP-16 chemo drug for 3 days in row Mon, Tues & Wed. I have no idea how effective chemo was. End results for my husband were good and the job got done to get to surgery. I think the radiation had a really big part from what we understand. They were going to repeat the VP-16 in couple weeks and oncologist just stopped it after seeing the test results. I think the total radiation treatments were 37. They added a few at the end that we didn't realize they were going to do. They changed the angle some. Those he even was taken to when he was inpatient at hospital.
  24. I removed the lengthy signature file. I posted in My Story and then included the link in my sig. Think that was what was meant to do. Took me a while to get back here. As of this past Thursday it looks like my husband might be on a recovery road finally. I hope so. It was one thing after another. On July 5th he ended up in the hospital with infection or pneumonia. Thought pneumonia at first but not sure. Was there until July 10th on IV's. They did a bone marrow test while there. Of course, he just had to have an allergic reaction to one of the IV antibiotics. Like he didn't have enough in treatments. It was Clindemycin (?spell). This time he broke out in a rash and itching in addition to the rest of it. He has not had a smooth go ot it. However, he has been blessed with the opportunity to have surgery and so far 2 CTscans show no cancer. Hopefully that will continue to hold for the Pet Scan. He had a really good surgeon who he has been released from now. The nurses in the hospital have been great. He is anemic and Oncologists caught that just before he went into the hospital. He will be getting vitamin B12 injections monthly. He is just getting off the pain meds. Had it down to one time a day for while. I do thank the people here that did help wtih questions that I asked. Thanks too for the encouragement. We have learned a lot. This is a horrible disease. If I was more stable myself I would really clean up my story but just don't have enough time and patience right now. Maybe something will help someone else. Thanks again.
  25. 67 year old male @ diagnosis smoked 45+ yrs - Quit 2002 NSCLC - Squamous Cell Carcinoma Chemo and Radiation Treatments together Allergic reactions to Taxol and Taxotere. This is long but I don’t know where to edit it at, it all got us to where we are today. There were unnecessary delays in our opinion. My name is Mary and my husband, Joe, is the Patient with the cancer. We have been married almost 47 years. Prior health not too bad. 9/14/06 got Heart Stent for blockage. Plavix & aspirn since, until started cancer treatment. 9/7/07 at Heart Dr for heart symptoms. SOB, pains. X-ray was questionable. 9/14/07 - CTscan. Heart Dr referred to Pulmonary Dr re:'RLL mass with hemoptysis, weight loss, etc.RLL neoplasm by CT-need biopsy bronchoscope." 9/19/07 - Pulmonary Dr (suspected Valley Fever) 10/2/07 - Bronchoscope (not enough for biopsy) 10/8/07 - Pulmo Dr. Cancer ruled out, but still could be. 10-22-07 AM - CTscan 10-31-07 - Pulmo Apptmt. From broncoscope Rare Pulmonary Infection: ACTINOMYCOSIS Medicine Augmentin XR 1000/62.5mg 2 in AM and 2 in PM (huge pills). About 6 weeks after starting the pills realized was only taking 2000 & not 4000 mg. Still cannot rule out cancer and have to watch the growth. 12/21/07 - CTscan. Growth had grown 1/10/08 - Needle Biopsy 1/16/08 - Heart Dr follow up on SOB but now thinks it is lungs. 1/17/08- Pulmo Dr called with biopsy results: Squamous Cell Carcinoma lung cancer (NSCLC) 1/21/08- Pulmo Dr followup and discussed things to date. 1/23/08 - Stress Test Nuclear - 1/24/08 - PetScan - 1/30/08 - Heart Scan setup. Bummer! PetScan, 1/24, scheduled after Heart. Test stopped due misinfo.. He wanted the Pet done and so they agreed TM could still be walked on Tuesday AM 1/29 Go for PetScan find he has had the nuclear testing started 1/23 and so cannot do. 1/30/08- Reschedule Pet Scan. Cannot do the 1/29 finish TM. Heart Scan was to be 1/30 Cancelled ALL heart tests for now. At first we expected the PetScan and then the Heart and back to Pulmo. Didn't happen. Delays & Mess! 2/1/08- Pulmo Dr. followup Pet scan results growth has grown from 4.2x3.3 cm to 5.5x3.5 cm show in two of his lymph nodes on right also. Stage 3B 2/4/08 - Ocology Dr(apptm personally made by Pulmo Dr. only a Dr could call on Fri and appmt on Mon. Both Drs agree no surgery, Both Drs claim this is not the SOB cause. Full PFT was 2005. Ocology Dr didn't want to wait much longer than 2-3 weeks to start Chemo. Both Drs seem to think same. Was told that cancer pain starts it doesn't stop. so far any pains come and go. Had been having pains and was concerned. 2/5/08 - Bloodwork & 2/6/08 - Radiology Dr & 2-7-08 - Heart Stress Test. 2/8/08 - Radiology (marking) AM & Port put in PM 2/12/08 - Brain Scan & 2/14/08 - Chemo Class. 2/15/08 - Heart Dr AM Done but problem. Something on stress test. Did a couple tests today & Angiogram 2/15/08 Radiology PM simulation Was still Done but now held off week for treatment. 2-18-08 Chemo & Radiation set back 'another week'. Grrrr 2/18/08 - Angiogram done. No Heart Problem and not cause of sob. Cleared start Treatment -Brain Scan was ok 2/25/08 - Chemo & Radiation Begin (Mondays only Chemo - Radiation 5 days wk-expect to do 6 weeks) Chemo, will be Carboplatin (paraplatin) and Pacitaxel (taxol)2/25/08 Allergic Reaction to Taxol. Stopped Taxol and finished with just Carbo once stable. 3/1/08 Chemo treatments now Carboplatin and Taxotere Saw Onc Dr. this week due to problems. 3/3/08 2nd Chemo Treatment Carbo and Taxotere and all went well. 3/6/08 Called Oncology Dr due to problems and told to come to office. Seemed better by Saturday, 8th. 3/9/08 Called Dr on call (Sunday) and told go to ER. Stayed in hospital until Tuesday. Continued radiation while in hospital but no Chemo on March 10th. Did miss radiation due to too sick on March 7th. CTScan & Radiology Dr indicated tumor shrinking. 3/17/08 3rd Chemo Carbo & Taxotere had allergic reaction . 3/24/08 Radiologist talks encouraging and says tumor is shrinking and radiation doing its job. Then the Oncologists sounds more discouraging. Not exactly sure what that was about. I should have attended the appointment but didn't. He came home real down. Almost sounded like couldn't do surgery and yet the Dr set up an appointment and also the Pet Scan. Onc Dr talked like not much hope or at least way Joe took it. 3/24/08 4th Chemo Carbo and Taxotere. Another allergic reaction. Now Joe recognizes a reaction very soon. First time was very frightening. Now something different 3/31/08 5th treatment should have originally been the last treatment in this series of six. Changed this week to VP-16 chemo drug on Mon, Tues and Wed. This was to be 1 week on and 2 weeks off. Oncologist indicated giving more treatments of Chemo on 4-21 but put hold on after all reports came in. Week of March 31st, was 'suppose' to be: Tues: Pet Scan. Wed. CTScan and Surgeon Apptmt. Thurs. Oncology Dr. Fri. Pulmonary Dr. NOTE: After talking to us, the girl at Pet place was calling Dr Friday 3-28 about scan being so soon, when Chemo not done yet. We didn't hear back until Monday afternoon. As of noon Sunday, started eating per Pet instructions. New schedule. No Pet on April 1st and later in day Monday, found out could change diet, again. Starting March 31st Chemo will be the Carbo and VP-16 and now on Mon. Tues & Wed of this week and then again for 3 days starting April 21st. Pet Scan was moved to 4/7 with Oncology Dr Apptmt on 4/9 and not this week. Joe did do okay with his first new chemo treatment today. This week is the end of a 6 week radiation treatments. They have just changed the angle of the radiation. Joe is losing his voice now. Hope that does not last. The Ocologist has indicated they will be giving him more treatments of Chemo. Joe has several side effects and ultimately even took him to hospital. He thinks from radiation and they say no but the list says yes. Chemo nurses said they get blamed for everything. (grin). A good spot in all this is that my husband does like the nurses. He had a lot of coughing in the beginning and that is letting up. Radiation said that is the radiation working on the tumor like a good thing. Hardly coughs much anymore compared to first few weeks. What an emotional ride this is. Original plan sounded like Thought treatments for 6 weeks, & retest. Never had a Bone Scan. They did say bone scan can even wait till after start treatment. Now it sounds like they will let the surgeon know about the Pet Scan after it is done and Joe will have seen the Surgeon this Wednesday. This disease is something else and then with all the confusion on the appointments, sure has not done any of us any good. It seems my husband has less patience and now I have tried to deal with the phone calls unless it is where he has to describe how he is feeling, if sick. I think this is where we are at. It was a long day today. If and as I get more comfortable I will have questions. These are people's lives at stake and often seems so unfair the way many are treated. I am not necessarily referring to us. I am learning to speak up. I guess that brings us to April 1st. Don’t count on anything. SURGEON Appointment changed to 4/14/08 now due to change in Pet Scan. ALSO Now going to add ANOTHER week of radiation which will be next week. 4/7/08 Pet Scan done & looking good, tumor shrinking 4/10/08 Called Oncology Dr due to very low WBC & Very low BP. 4/11/08 Pulmonary Dr. 4/14/08 and 4/30/08 Saw Surgeon 4/15/08 Brain Scan & was last Radiation Treatment. 4/17/08 Oncology Dr. WBC ok and can quit wearing the masks in public. 4/25/08 Have PFT setup to qualify for surgery. Difficult weeks with nausea, fatigue, sweats/fever, coughing, bad headache, dizzy, insomnia, bowel problems, Low BP. Had to deal with delayed and changed appointments. To ER & in hospital few days. Felt it was more due to radiation than Chemo, at least as a combo. One week hardly slept at all. Few unexpected quick trips to doctor IV's, Blood. They were treating him aggressively. Dr & Surgeon agree Pet Scan looks good, Tumor was shrinking and Dr felt surgery was possible. Surgery done 5-16-08. Removed RLL & middle lobe and some lymph nodes. All dead cells from treatment EXCEPT there was live cancer cell in one lymph node?? Will be having more chemo but not before 6 weeks after surgery. The hospital stay was longer than some. They said that often with radiation treatments like he had the recovery is slower. It took time to get the drainage tubes out. Just had to wait. Actually I felt safer with him in the hospital this time. I could not begin to cover everything but he did have numerous smaller problems after surgery. May 27, 2008 released from hospital. Had several appointments with various doctors for while. I just cannot remember it all now. It was one problem after another. Not real big but enough to really slow down his progress. After surgery he didn’t get any sleep for couple days and then they could not get him to walk. About that time he started hallucinating and surgeon said was combo of pain meds and lack of sleep. That got fixed. He had a real problem trying to eat. Ultimately that was fixed by the dentist and an adjustment to his upper denture. Everyone was at a loss why his mouth was so sore. Finally it cleared up and he was able to eat. His BP has been an ongoing problem trying to regulate. His body has gone thru a lot and is adjusting to changes. Emotional state I now understand becomes an important issue. I tried so to help in all ways I could to cover for him. Had to deal with anxiety. Of course we had personal issues building on top of this. Like the evening our air conditioning went out and it was around 110 degrees during the days. If you the reader are the caregiver, watch this very closely. I had seen my husband get emotional thru the treatments. I totally missed it after the surgery. In talking with others I find that a lot runs thru their minds, as I am sure it does. I started taking anything I could from him that might create more stress. We were having family issues and I thought he was able to keep up. Not so. He fooled me. Watch your loved one. If you are the patient, ask for help in some way. Don’t try to be a real tough person or protector because what anyone goes thru with cancer has got to be just overwhelming. I only was an observer and I felt a lot of it. Finally got report from a Ctscan and it looked good and no cancer. That was 7/3/08 and 7/4/08 was 7th week since surgery. 7/5/08 To ER per instruction of on call doctor at Pulmonary office. Suspect pneumonia and kept him to give anti’s by IV. Allergic reaction to the 2nd one, clindamycin. Even broke out in rash and itching, plus. WBC is 2 and should be 10. Either pneumonia or other infection. Did Bone Marrow 7/9/08 7/7/08 Had finally got appointment at Heart Institute and had to cancel since in hospital. Many cancelled or hard to get appointments continued with us. We seriously were going to quit one doctor group but we may be working it out yet. Did another CTScan in hospital stay and it also turned out to be good. 7/10/08 Released from Hospital The first signs I have seen that may look like things are more under control and starting to recover, altho very slowly, was this Thursday, July 17, 2008. He saw Pulmonary Dr and next day the Oncologist. He is now getting Vitamin B12 shots monthly. He had a bone marrow test before released from hospital. They never could confirm what the infection was. They stated it is easier to treat if they know because then they know just what antibiotics to use. It is cleared or clearing and that is good. He is sleeping with oxygen but that would probably have been anyway. He was suppose to use a C-pap and never could. His overnight o2 this past week has worked well. This has been quite a journey and not easy. I just pray that the Pet Scan when done will be as good as the CTScans. I don’t know if any of this will help anyone. I know so much more than I did in January. It is unbelievable the number of patients going thru the oncologists office. All I can say is never give up. You never know. I will just update only major issues, if any. A support group like this is so helpful to get the answers to questions and especially when you start this journey knowing absolutely nothing about what you are about to encounter.. Often so much of fear is just ‘not knowing’. Thank you all and God Bless All of You..
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